Friday, July 1, 2016

"Some of us hide it, but I won't"

     The following was written by Saaim Ali, another person who has come into my life since my epilepsy reappeared last summer, after so many years of smooth sailing.
     Since I began to follow her Instagram account last year, I have been impressed by Saaim's positive attitude and fighting spirit. She reminds me a little bit of myself, or at least how I try to be.
     After reading a recent post about her struggles in school, I asked Saaim if she would like to write something for this blog, and she agreed.
     My name is Saaim Ali. I am 17 years old and will be a senior in high school in October. From when I was a young girl until now, it has always been difficult for me. I would actually cry at home when I couldn't understand something at school.
     Luckily, my dad is able to help me with math and science, but even when he did, it was sometimes overwhelming and I would cry again. I never really spoke up about it to any of my friends, but my grades showed my struggle.
     In math, I wasn't very good because no matter how hard I studied, it seemed to get me nowhere. Still, I kept going.
     When high school started, it was like a new beginning for me. I went to classes on time but still, my grades were horrible. It was frustrating, and my teachers probably thought I was lazy.
     My bad grades were not because I didn't care but rather due to my epilepsy. I don't like to blame things on my epilepsy, but it feels like I have no choice.
     People called me stupid, and when I explained it and told them about the seizure activity in my brain, they ignored me. It felt like an atomic bomb waiting to explode, and one day I did. It was so overwhelming that I wrote on my wall that I was stupid with a broken heart.
     I don't talk about my problems to gain pity. The reason I talk about them is to make the people who don't give a shit stop and listen. Yes, I can study even harder and yes, I can study sooner. Trust me when I say that I have tried.
     Now that the Common Core is here, I feel like my high school experience is going to be worse than ever. There is more I would like to say, but I am running out of time.
     Epilepsy isn't a short-term effect. It's with me throughout the day, every day. When my hands start to shake and I stutter or mix up my words, you should notice there is terror in my eyes. I am afraid.
     Some of us hide it, but I won't. I am afraid, but I won't let epilepsy win this battle.

Thursday, June 23, 2016

One Year Later

     I always knew they would come back, but I didn't think it would be so soon. It was one year ago today that I opened my eyes and realized my cheek was resting on the warm cement in our back yard. There was no question in my mind what had happened because I remembered the music...Stevie Wonder singing in my ear...followed by the memory of that same song being sung to me when I was a little girl in elementary school.
     My mind had traveled back there, but my body had remained stuck in 2015. It was the same feeling as always, but deep enough to make me go unconscious on the sidewalk. I treated it as I had the last one in 2013, like a fluke, something that had happened because my mind and body were stressed out.
     I could never have guessed the journey that was ahead of me over the next nine months or the way it would change me and how I view my unique condition and myself. Like that seizure in 2013, I thought it was a one-time occurrence, a breakthrough seizure not to be repeated.
     There were only two really bad parts to the many months of active seizing, the car wreck the following week and the reaction I had to that awful drug. When you lose consciousness while driving, the seconds before and after opening your eyes again are terrifying because you don't know if you hurt anyone else.
     It still scares me to remember that I almost had a passenger last June when I was driving down to visit my son in Richmond, and it's hard to describe the intense wave of relief that washed over me when the lady who stopped to help assured me that no, I hadn't driven my car into anyone else's.
     When I called my husband to tell him what had happened, I felt guilty, like I had done something bad on purpose. That's how it is with epilepsy; you are embarrassed even though it isn't your fault.
     Before my seizures came back, I thought there were oodles of new drugs to choose from, but now I know my choices are limited. After going out of my mind on Fycompa, I'm even more wary of the chemicals available to keep my brain from doing its weird little thing.
     The drugs to treat my disease are much more frightening than the illness itself, or at least the version I have.
     Since last June, I've done quite a bit of research online, searching for others with the same seizure type as me. I recently found a woman who described hers as "psychic seizures" and said they had changed her way of thinking from the person she was before.
     At last, I thought I had found someone else like me, but then I kept reading. She had had enough of her "psychic seizures" and wanted them to go away for good. I stopped reading and went back to embracing my freakishness.
     I have made a lot of new online friends, other epileptics who have "it" much worse than I do or whose children have epilepsy syndromes. People whose seizures are under control don't talk, write or blog about it because of the stigma associated with epilepsy and because it really isn't on your mind much when a couple of pills a day keep it under control.
     All I hafta do is look at some of my seizure videos to remind myself how hard I try to hide it. The ones I filmed while outside in plain view of my neighbors look different than the others; my eyes dart around to see if anyone is witnessing my weirdness.
     I had more than 150 seizures before the Depakote Sprinkle made them go away. Only once did I do something I had never done before, and that is try to go deeper into the seizure. I'm not sure what I was thinking at the time.
     Usually, it just happens, and I wait until it's over. If I'm in a public place, I try to look normal, whatever that really means. And if, God forbid, I happen to be behind the wheel of a car, I fight it with all of my being.
     But that one time last winter, I was in my basement when the aura came over me and I sat down on the couch. It was a safe place with nobody else there, and I decided to give in to the experience. As usual, I was going back in time.
     The Brady Bunch was on my mind, which I watched in reruns every day after school when I was so young that my homework was easy enough to do in front of the television.
     There was enough warning for me to film the entire seizure, which felt like it lasted a minute or so. I was surprised and a little scared when I looked down at my phone afterward to find that I had been out of it for seven and a half minutes.
     The video isn't very different from the other ones, except my eyes are fixed for a much longer time and I'm blinking a lot more often. I didn't come out of it with any particular memory of where I had been during that time.
     Like I said, I'm not sure what prompted me to try and "seize deeper" than usual, but it's an experiment I won't be repeating.
     In an ideal world, I would be able to control my seizures at will, without medication. In times of stress or when I needed an escape, I would simply will myself into that other state of mind, long enough to come back with my spirits lifted but not long enough to damage my brain.
     That isn't an option at this time in this world, so I will keep taking my meds twice a day and hope they continue to work because even though I always knew my seizures would come back, I wasn't ready for it to be last June.

Thursday, May 5, 2016

A Shockingly Rotten Way to treat Humans

     The following letter was obtained through the Freedom of Information Act. I'm happy to report that the FDA is moving forward with plans to ban the use of the electrical shock devices discussed in the letter. The Judge Rotenberg Center in Canton, Massachusetts is the only place in the United States where such devices are used.
     It "serves" children and adults with developmental, behavioral and emotional disabilities and defends the shock-treatments as being more humane than the use of psychotropic drugs. Some of the children and adults wearing shock devices at the center have autism.
     Please remember that one-third of people with autism also have epilepsy, so I assume there are people at the JRC who are repeatedly shocked while having seizures for behavior that is directly connected to epilepsy. The shocks would then lower their seizure thresholds, increase anxiety and create an endless loop of torture.
     On Page 5 of the letter, Glenda Crookes describes psychotropic drugs as a form of chemical restraint that would leave JRC residents in a semi-comatose state. Unfortunately, the 40 to 50 residents currently being shocked had no choice in deciding whether they would rather live in a highly sedated state or one in which they are constantly in fear of when the next electrical current will flood through their bodies.
      That's because the people wearing shock devices are placed at the center by their parents. People who call themselves physicians come up with the "treatment plan" for each individual. I'm not sure if those are doctors of philosophy or actual medical doctors who supposedly take an oath to do no harm.
      Many of the side-effects of antipsychotic medications listed on Page 5 can also be found on prescription inserts for commonly prescribed antidepressants, sleeping pills and painkillers. Weight gain, sexual dysfunction, dependence and sedation are a few examples. The only difference in Crookes' description is the addition of select adjectives, such as "severe," "major," "acute," and "sudden." I may lack the computer savvy to scan and present the letter in a pretty format, but it isn't beyond my skills to spot someone playing with words to her own advantage. 
     Reference notes are included as a reminder that people who feel the need to defend their actions often try to spread the blame.
     Administrators at the JRC consider it more humane to attach a shock device to someone's forearm, upper arm, upper thigh, calf, torso/stomach, palms of hands, soles of feet and buttocks than to administer medication that might alleviate the drive to harm oneself. 
    This has resulted in 45 to 50 individuals being the only people in the United States to have to endure this type of treatment on a daily basis for whatever behavior the center deems inappropriate. Every other residential treatment facility in the country uses "treatments" that are not so shocking.
     Thank you to the FDA for finally calling an end to this brutality. I hope the entire center gets shut down and everyone who defends it stripped of their license to practice elsewhere.